Abstract copyright UK Data Service and data collection copyright owner.
The primary objective of this research project was to establish what it means to live with a Spinal Cord Injury (SCI) on the basis of the lived experiences of the injured individual and partner caregiver. Seventeen semi-structured interviews were conducted with individuals with a SCI. Eleven in-depth semi-structured interviews were conducted with partner caregivers of individuals with a SCI. The interviews were transcribed verbatim and were subjected to Interpretative Phenomenological Analysis (IPA). On the whole, the injured individuals praised their health care but they did indicate a need for psychological preparation for the sexual difficulties, incontinence issues and biographical disruption that they experienced in their post-injury lives. A radical loss of control and a dependency on other people were reported. Collectively, these experiences led to what was described as an "emotional rollercoaster" defined by feelings of frustration, entrapment and depression. Other people’s reactions to the acquired disability further contributed to emotional distress. Acceptance, downward comparison and social support buffered the devastating impact of SCI and the impact it had on participants’ quality of life. The partner caregivers reported feelings of anxiety related to prolonged separation from the injured person during their stay in hospital and also to their caregiver duties. Their new caregiver role brought burdensome responsibilities, financial concerns and a loss of freedom, spontaneity and biographical disruption. A dramatic shift in the marital relationship and a shift in role from lover and partner to purely caregiver resulted in subsequent feelings of entrapment, despair and suicidal ideation for some participants. A loss or change in identity ensued and overall, the impact of caregiving had a detrimental impact on the participants’ quality of life. Accepting the new caregiver role, social support and taking "time out" from the caregiver role were all reported to buffer the effects of caregiver burden.
Volunteer sample
Face-to-face interview
